HOSPITAL UPDATE#1

Kaidence had a good night. In fact, I think it was the best night that we have both had since last Thursday. That says a lot for hospital sleep. This morning she still is not producing much urine for the amount of fluids that she has been given, however that seems to be improving slowly. Her numbers for kidney function look much better today and will hopefully continue that way. That is a BIG relief for us. Also, her white count is down from 22 to 18 this morning, so the antibiotics are doing there job and hopefully it will be back to normal soon.

Kaidence held down some feeds last night and this morning wanted some yogurt. Her oral aversions have come back, but always do when she has been sick. It is almost as though she has to learn to trust herself swallowing again. She wants to eat the food, but is too afraid to swallow it. She looks so much better today. She is sitting up and has taken over the rocking chair and food tray in the room. She insist that the food tray stays in front of her, like a sense of Independence being able to feed herself when wanted.

Our plan for today includes playing a little hospital BINGO, getting a chest x-ray and waiting for our blood culture results. Thanks for all of your prayers. If things continue well, we may make it home just in time for dinner tomorrow. I will post a little later today.

SWINE FLU STRIKES AGAIN, BUT THIS TIME WITH PNEUMONIA

Well, I am posting this from the "house upon the hill". Kaidence has been sick since Saturday with fevers, headache, cough and vomiting. I was told that we would not worry too much since she already had swine flu and should not get it again, BUT surprise She has H1N1 AGAIN and Pneumonia. The VRP panel the we had done on Sunday night came back negative for the flu, but then as I was siting in the ER today they informed me that it had been sent away and came back positive.

So kaidence's White count is 22 (not good for the immunosuppressed). Also her kidney numbers were a mess, we are hoping only because of dehydration. Her Prograf level keeps increasing even though we are trying to decrease it (it always increases when kaidence gets sick). She is almost 2 years post transplant and so they like her levels between 5 and 8. Today they were 18. This can also add to the nausea and headaches. I haven't slept since Thursday night and am feeling it a little tonight. Last night was the roughest, I think I worried and prayed for a wet diaper all night. The moment Kaidence would get 10cc's in her tummy, it was back up within a minute. I called cardiology this morning at 5 AM and left a message for the transplant coordinator to call me first thing. I wanted to bring her in for fluids and labs. I am so glad that I did.

We met with a doctor from 'Infectious Disease' that knows Kaidence all to well. He explained that when a immunosuppressed person gets H1N1 they get the initial virus for about 3 days and then it quickly clears, which Kaidence's did. They do well for a awhile and then 2-4 weeks after the initial infection they get sick again. This time usually with a bacteria infection like pneumonia as a secondary infection in addition to the H1N1 symptoms again. They aren't sure if when they get the second round of the H1N1 if the virus is alive or dead. The test only shows that it is positive for the H1N1 DNA. Reports seem to show that those who are immunosuppressed can shed the virus up to 21 days. That is a couple of weeks longer than those with a healthy immune system. We got a good laugh, because for once Kaidence actually did something that followed what they call "a text book case". She is usually writing her own book.

Anyhow, it looks as though I may get to partake of yet another lovely Thanksgiving Dinner here at the hospital. But hey, the Rainbow Cafe throws in free dessert and drink as and added bonus for Thanksgiving.

Tomorrow we will take more labs and hope that her kidney function is recovering and that she can keep things down. She is still very dehydrated this evening. They currently started Tamiflu again as well as two antibiotics for her pneumonia in her left lung.

We are heading to bed and praying that tomorrow brings much improvement.

MRI AND ARM RESULTS

Today was the day for Kaidence's MRI. We weren't too sure that we would make the appointment anyhow because Kaidence has been sick again since Saturday with fevers, coughs and vomiting. However, they wanted it done anyhow. It turns out that she has to go back in to place a stint in her LPA. I am bummed that we just didn't do it on Thursday, but it is better to know exactly what we are looking at and if it's was really needed. Dr. Gray said that it is a pretty tricky place to place a stint, because of where the kink is and its angle. It turns out that her right lung gets about 70% of the blood and the left lung is getting about 30%. This next time I am not so sure that Kaidence will be as cooperative. She knows what's going on and is a little unhappy about her bruised groin. We are hoping to do that around the 2nd week in December. I am nervous all over again.

Also, I am soooooo HAPPY to report that Kaidence's arm has regained all of its function. I am so relieved. What a blessing. Thursday night when her arm was not working at all she went to get off the couch but fell face first and got a bloody nose because her arm could not hold her. It would drag as she walked, but now looks as though nothing has happened.

Anyhow, that is our update. Thanks for checking in on our little family and Miss K.

Some GREAT news and a little not so great news!

Well, first I must give the good news first........NO REJECTION. Zero's all the way across the board. Part of me still can't believe it. Her AMR also looked better than last time. We are overwhelmed with happiness from that news.

Next part, I noticed that Kaidence was not really moving her right arm much after the cath. She also would say "owie" if I touched it. Didn't think much of it because she also had the blood pressure cuff on it. However, as the day went on she was still not moving it. I went to give her a sippy and noticed that she could not grasp her cup. She cant bend her arm. Almost like her muscles aren't working. She can twist her wrist and move her arm at the shoulder, but cannot bend her arm. It just hangs straight. We aren't sure what happened. She has no other symptoms of stroke or blood clot at the time. Dr Gray said it is very rare (should be my first sign) but sometimes patients can get what is called a brachial plexis (sp?) injury. Basically because in the cath lab they have their arms raised above their head for a long amount of time (today was longer then expected) it stretches the nerves and damages them. Most patients will recover their arm function, but it may take awhile and therapy. If she has not regained more function on Monday, Cardiology will schedule an appointment with neurology. Kaidence would not be Kaidence without some sort of drama thrown into the groove of things. Hopefully she will tolerate her arm issue ok. Right now I can tell that she gets frustrated at times. She can't climb onto things any longer, catch herself when she falls, get herself her sippy to her mouth, sit herself up from laying or do her sign language. We are praying that this will resolve itself in a timely manner before she gets into the habit of not using that arm at all. She is a happy little stinker tonight just to be home. In fact she talked and sang to herself the whole way home.

We are trying to focus on the amazing news from her biopsy. We have been so blessed and the Lord will continue to bless Kaidence and find a way to provide for her what is needed. Monday we will have results as to whether a stint needs to be placed and we will maybe have a better idea of what her arm will do. Thank you for all of your prayers. I will update if anything changes.

ALL FINISHED!

Kaidence is finished. Everything looked great except for the LPA. It is not narrowing , but kinked instead. It is most likely because of how her heart is sitting in her chest. We will be back on Monday for a CT or MRI and that will tell us how much blood is getting through to her left lung. It is obvious that the LPA is much smaller than the RPA. In fact, it is about half the size. However, everything still looks as though it was caught early enough to fix.

I have not spoken with transplant team yet, but Dr. Gray said that besides the kink in the LPA that her heart looked PERFECT! Not a day goes by that I am not amazed by the journey that we have had and that somebody gave us this amazing chance at life. It is amazing to see pictures of this heart that beats within my daughter. When they transplanted Kaidence, they hooked up her new heart and it started beating on its own without needing to be shocked or anything. I truly believe that is at home within Kaidence for this time.

We will keep you posted on the biopsy results and all the other many numbers that they look for. Thank You for your prayers. We are so grateful for such an amazing support group.

Cath Update #2

We still have not heard anymore. This 2-3 hour cath has just hit the 4 hour mark. I am starting to freak out a little. I keep thinking that maybe my pager is broken, even though I know it is not. I always thought as well when she was waiting for her heart. I am trying to keep myself busy, but my mind has a different agenda. I cant stop wondering what is going on and if everything has gone ok with the ballooning of the artery. I keep thinking that I should hear from them any moment. Just thought that I would update.

Update to cath #1

Kaidence's cardiologist just came by to let us know that Kaidence is dong well. They think that there is narrowing of the Left Pulmonary Artery (LPA). However, we have had this discussion before. In fact 6 months after tx, we sent Kaidence to the cath with the idea that a stint would be placed at that time. Dr. Cowley felt that it was just the angle of her artery and that blood flow was fine and therefore found no need to place the stint. Dr. Gray was wanting to place a stint after getting a look at things this morning. They will balloon her artery in the cath and see what happens. If things look stable at the point Kaidence's cardiologist wants to wait and do a MRI of her lungs and heart that will show the blood flow to both. If this looks bad, then we will go into another cath to have the stint placed. It would be one more cath, but better than having something placed that is not needed.

(FYI - a stint opens up the artery and allows more blood flow. If the artery goes without the appropriate amount of flow then the vessels of that artery will die off and cause serious problems).

She still is not finished and we are anxious to see her. Still keeping a prayer in our hearts.